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Privacy policy

Who we are

Whenever you see the words 'we', 'us', 'our', 'the charity' or 'Parkinson's UK', it refers to the Parkinson's Disease Society of the United Kingdom and its subsidiary.

Parkinson's Disease Society of the United Kingdom is a registered charity in England and Wales (258197) and in Scotland (SC037554). A company limited by guarantee. Registered no. 948776 (England and Wales). Registered office: 50 Broadway, London, SW1H 0DB.

If you have any questions in relation to this privacy policy or how we use your personal data they should be sent to:

While it may be helpful to contact us in the first instance, you can also lodge a complaint with the Information Commissioner's Office, which is the supervisory authority for data protection matters in the UK. Contact details are available on the Information Commissioner's Office website.

You can also view a full copy of our compliance framework.

Your rights

Here is a list of the rights that all individuals have under the General Data Protection Regulation (GDPR). They don't apply in all circumstances. If you wish to use any of them, we'll help you as much as possible.

You have a right to:

  • access your information. This is called a Subject Access Request. Whether you are requesting information about yourself or on behalf of someone else, find out more about how to complete a Subject Access Request.
  • correct any information that we hold about you
  • erase any of your information that we no longer have a right to hold about you
  • access a machine readable version of your data, although there are some conditions
  • ask us to stop us doing anything with your data unless we must by law or a contract
  • stop any automated decision making. This is where a computer makes a decision about you. It should be noted that we do not do this.

To exercise any of these rights please contact our data protection officer:

What personal data do we collect?

We collect the names, addresses, email addresses and telephone number of reviewers, applicants and collaborators. Applicants and co-applicants submit CVs when applying for funding which contain current and past details of education and employment.

How we make sure it is legal to process data

We rely on the following legal bases to use your personal data.

Where it is needed to fulfil our contractual obligations

The data processed to meet contractual responsibilities includes, but is not limited to, data relating to applications for funding, reviews of applications for funding and the management of funded awards.

Where it is in our legitimate interests to do so

  1. To continue processing personal data on an individual who has exercised their right to erasure/to be forgotten. We will need to keep basic data to identify that individual and retain it solely for suppression purposes to prevent further unwanted processing.
  2. To follow guidance and recommended best practice of government and regulatory bodies.
  3. For management and audit of our business operations including accounting.
  4. To carry out monitoring and to keep records of our communications with you and our staff (see below).
  5. To administer our good governance requirements, such as internal reporting and compliance obligations or administration required for AGM processes.

To comply with our legal obligations

The data processed to meet statutory responsibilities includes, but is not limited to, data relating to: tax and money laundering.

With your consent or explicit consent

  1. For our decision-making in awarding grants.
  2. For some of our management of awarded grants.

Disclosure of personal data to other bodies or individuals

Making funding decisions

Applications for grant funding (which include personal data of applicants and collaborators) are disclosed to individuals outside Parkinson's UK for the purposes of review and making a funding decision. Applications will be sent to scientific, lay (people affected by Parkinson's) and members of our funding panels.

Managing funded grants

Selected information on awarded grants including the grant reference, grantholder®s name, host institution, grant title, lay and scientific abstracts, duration and value of support will be placed in the public domain on our website and/or used by the charity in publications, marketing and other promotions. The above details will also be published on the Europe PubMed Central website.

It is a requirement of our membership of the Association of Medical Research Charities (AMRC) that Parkinson's UK submits to it the following information on new grants: grant reference, grantholder's name, host institution, grant title, grant start and end dates, lay and scientific abstracts, value of support, grant type (ie project grant, fellowship, etc), whether the grant involves the use of animals and if so what species. We also share outcomes data with the AMRC through researchfish® for the purposes of sector-wide analyses.

We or the AMRC may publish the information grantholders submit to researchfish® in the form of analyses and evaluations, in case studies and in narrative to demonstrate trends and key outcomes. Where identifiable information is used we will ask the grantholder to review the text before publication.

Information submitted via researchfish® on a grant will be visible to the host institution if the organisation is a member of researchfish®.

Links between publications and charity-funded grants will be shared across the Europe PubMed Central and researchfish® datasets to reduce duplicate requests to researchers and duplicate reporting. Information on publications submitted to researchfish® may be copied into Europe PubMed Central. Links established in Europe PubMed Central or extracted from publication acknowledgements may be copied into researchfish®.

In order that grantholders are eligible to publish on Health Open Research, we will provide to F1000 the following information: grant reference, grantholder name and email address, and host institution.

To enable LifeArc to manage the intellectual property (IP) associated with our grants, we have granted a small number of LifeArc staff access to our grants management system. Grantholders may be contacted by LifeArc staff during the grant and after the grant finishes for updates on IP matters.

International transfers

For the purposes of making funding decisions, applications (which contain personal data of applicants and collaborators) may be sent to scientific reviewers or panel members who are located outside the UK.

How we secure your data

We operate a process for assessing, managing and protecting new and existing systems which ensures that they are up to date and secure against the cyber security threats.

Our Data Protection Impact Assessments consider security in detail.

Our staff complete mandatory data protection training upon employment and annually thereafter to reinforce responsibilities and requirements set out in our data protection policies, such as those on handling data securely and setting secure passwords.

How long do we keep personal information for?

We retain information on reviews and awarded grants in perpetuity.

Unsuccessful applications will be kept for 10 years, after which time the applications and related documents will be deleted. Top level information including applicants' names, institution, application title will be retained.

Unsubmitted applications will be removed from the system six months after the deadline for each grant round.